Just starting the journey

Options
Trinity789
Trinity789 Member Posts: 55
edited June 2014 in HER2+ (Positive) Breast Cancer

Hello,

On Wednesday I had the lumpectomy. The pain under the arm is ok but pretty swollen she took two nodes.I am waiting the final results of the pathology. Does it change much from the core bio? Because the tumor is small the doctor has stated she doesn't think its in the nodes but we are waiting. She also said she doesn't have a magic ball and how I wish they did....this waiting is hard to do. She doesn't think Herceptin may be in my future but the oncologist does plus chemo. I am confused about why they are not on the same page.

My mom had Bc at 41 as well. I meet with the genetic counselor next week for BRCA1 &2 testing. I truly am not sure what to do. If its positive I am thinking about having a full masectomy. 

Any advice?

· Share on FacebookShare on Twitter

Comments

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited January 2011

    Trinity, I am sorry you are joining us. As I am not HER+, I have no advice but I am posting to bump this thread up. Hugs to you.

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited January 2011

    Depending on what test they did for HER2+ they might not be sure. The FISH test is the most accurate. Also if you scored a 2 (on a scale of 1-3) then again it's considered unequivocal. I would be sure that they do a FISH test on the tumor when you get it removed to find out for sure. No need to take a drug you don't need on the other hand if you are HER2+ Herceptin is a must.

    Good luck with the genetic testing. I too went into testing thinking I would remove the other breast and rip out the ovaries too if I tested positive. I tested negative but we decided (BS & me) the other breast did need to go too anyway.

    · Share on FacebookShare on Twitter
  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Thank you for your thoughts

    · Share on FacebookShare on Twitter
  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Lago,

    I will find out if the used the  fish test. The core bio showed a +3. I am a little confused because I am learning about her2. Its more aggressive but the good news is that there treatment. If your more positive 2 or 3 then the meds should help more. Is that correct?

    Glad to hear you tested negative.

    I may rip the ovaries out. I have a cyst the size of a small orange and we were waiting to take it out until the genetic testing was done so we would know if the ovaries should go. While the cyst caused some pain I look at it as a blessing. Had I not go into the ER with pain I would have not had the Mamogram  a day later. It got the ball rolling. Do we know how fast Her2 grows before they can see it on the image?

    · Share on FacebookShare on Twitter
  • ScienceGirl
    ScienceGirl Member Posts: 207
    edited January 2011

    Trinity789

     Did the biopsy show that you are ER+?  If so you should ask your oncologist to request the OncotypeDX test.  This test looks at 21 genes (16+5control), that are predictive of the breast cancer recurring.  You will get a recurrance score, low, intermediate or high.  Low score usually = no benefit from chemo, intermediate maybe some chemo benefit and high score a large survival benefit from doing chemo.  I've never heard of anyone who is HER2+ not getting herceptin, ask your oncologist to clarify this for you.   While you are recovering now is a good time to set up a second opinion.  I found that doctors don't want to see you for a second opinion if you've already started your treatment after the surgery. 

    Yes, Her2+ tumors are more aggressive, but the good news is that herceptin is very effective at targeting those cells. 

    Good Luck to you and I'm sorry that you've joined us all in our journey.

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited January 2011

    You usually don't get an Oncotype DX test if you are HER2+ because they assume you will be getting chemo with herceptin.

    HER2+ tumors usually grow fast. Mine was really fast. They said I had if for 4 yeears… and in those 4 years it was 5.5cm! Most people have had their cancer for 10 years. All breast cancer needs to be a certain size before they can see it. I don't have the number off the top of my head but you can google that.

    Herceptin only helps those with HER2+ tumors (2 or 3). The FISH test give you a result of positive or negative. Be sure you get that FISH test so you find out for sure if you really are HER2+. The other test can give false positives.

    Herceptin isn't 100%. It works about 50% (I think) of the time. Also remember that not all HER2+ will spread. Yes there are some women out there that have long survival rates, HER2+ and never took Herceptin. There needs to be some other factors in place but they really don't know what they are yet.

    HER2+ prognosis isn't what it was years ago because of Herceptin. With the drug our prognosis is almost identical to some who isn't.

    · Share on FacebookShare on Twitter
  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Hello,

    I don't believe I am positive for the hormnones. I beelive they were neg. The oncologist said that test would not work becuase of my result. I will make sure. Maybe the lumpectomy will show different results than the core...

    Thanks for the advice about the second opinion.

    Take care

    · Share on FacebookShare on Twitter
  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Hi, 

    I appreciate the news. It sounds like its the best way to go and that the dcotor is on top of it.

    I keep wondering if there are any positives to her2+ in our bodies or is it only related to cancer?

    Thank you!

    · Share on FacebookShare on Twitter
  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Lago,

    That news about the cancer and Herceptin makes me feel better. I am still trying to find my way and all of this information really helps. I guess I will know more on Monday. I will make sure they use the FISH test.

    I made the assumption that all Her2 did spread since I am ductal invasive. The radiologist thought that mine could have been there 3-5 years but no one could feel it.

    Have a good night.

    · Share on FacebookShare on Twitter
  • 3daywalker
    3daywalker Member Posts: 54
    edited January 2011

    Sounds like you need to just wait it out Trinity. The beginnning results can be very confusing. They will give you everything when they have all the info. Keep it all written down, take a note book with you so you can keep good records they are very important to know. FISH is the only test I would go with checking for Her2+. Herceptin is a miracle drug for most of us her2+babies. Stay positive and remember they have come such a long way with all the new drugs. Keep us informed, ok?

    · Share on FacebookShare on Twitter
  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Hi,

    Thanks for the note. I found out that they felt that they did not need to use the FISH test. I am being treated for HER2 based on the other test because it tested so strong.

    · Share on FacebookShare on Twitter

Categories